Taylor is a bundle of energy and determination who inspires her family every day. This typical teenager doesn’t let anything keep her from doing the things she loves.
“Taylor will try to do everything on her own before she asks for help,” says Taylor’s mom, LaTeesa. “She's growing into a lot of independence.”
Here are five things to know about Taylor:
1. She has a rare genetic condition.
Taylor was diagnosed at age 3 with Morquio syndrome. The disease hinders the body’s ability to break down sugar chains (called glycosaminoglycans) that help build bone, cartilage, skin and connective tissue, such as tendons and ligaments. There is no cure, but Taylor has undergone enzyme infusions and a spinal fusion to manage her symptoms.
2. “Team Taylor” is multidisciplinary.
Morquio syndrome can affect several organs and systems in the body, so Taylor sees specialists in neurology, pulmonology, cardiology, genetics and orthopedics, as well as the Center for Cancer and Blood Disorders. She also has frequent visits with physical and occupational therapists. LaTeesa appreciates how the medical team at Phoenix Children’s helps make sure that “Taylor's care is monitored in all ways possible.”
3. She is creative, outgoing, chatty, tech-savvy and fearless.
Like any other teenager, Taylor loves her iPad. She’s active on social media—especially TikTok. “She creates amazing videos,” her mom says.
Taylor is a sophomore in high school, and her favorite class is Art & Photography. She also loves watching scary movies.
4. Taylor has a large family, and they know how to have fun.
Taylor is the second youngest of five children, and she loves being with her family. When they’re all together, things get rowdy. “They are a handful together,” LaTeesa says, laughing. “I enjoy watching them having fun, but sometimes I need to put in my earplugs and ignore them.”
5. Don’t get in her way!
When Taylor lost the ability to walk just over three years ago, it was a big adjustment for her and the whole family. Even so, she embraces life and is determined to get around on her own. In fact, Taylor won’t let anyone get in her way. “She’ll just run you over with her wheelchair,” LaTeesa says with a laugh.
- Taylor will try to do everything on her own before she asks for help. She's grown into a lot of independence.LateesaTaylor's mom
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